Welcome and thank you for reaching out to Cure SMA! The diagnosis of SMA can be confusing, scary, frustrating…pretty much the whole gamut of emotions. But you are not alone. You are now part of Cure SMA, a network of individuals with SMA, families, researchers, clinicians, and other health professionals who are determined to make a difference.
Cure SMA is here for you. Founded by a group of parents in 1984, Cure SMA will provide unbiased support for all individuals with spinal muscular atrophy (SMA) and their families, and will fund the most promising research. Included on this page are resources that cover a range of topics on SMA and are meant to provide you with information needed to make decisions about treatment, care, and involvement with the organization. Also included are links to previous issues of our research newsletter, Compass, as well as our community support newsletter, Directions. When you have the opportunity, look through this information and visit our full website at www.cureSMA.org. We want to provide the information you need to navigate life with SMA.
Please do not hesitate to contact us with any questions.
Cure SMA
925 Busse Road
Elk Grove Village, IL 60007
United States
www.curesma.org
(800) 886.1762 (US and Canada only)
(847) 367.7620 (All other locations)
Cure SMA Care Series Booklets
With publications like our Care Series Booklets, along with other helpful resource booklets created for all segments of the SMA community, Cure SMA is committed to providing the entire community with the information they need to make decisions about treatment and care.
To access and download all of our Cure SMA Care Series Booklets, click the button below. These booklets discuss topics from genetics of SMA to nutrition, breathing basics, musculoskeletal system, mental health, and much more! We currently offer our “Understanding SMA” booklet in nine languages and will be continuing to expand our translated collection.
Cure SMA Publications
Newly Diagnosed Survey
We acknowledge that it can be overwhelming to learn about SMA and understand your treatment options, especially when you are already overwhelmed with news of the diagnosis. But we are here to help and want to better understand your needs.
Cure SMA is committed to addressing the needs of individuals with SMA and their families. To reach this goal, we have developed a Newly Diagnosed Survey. By sharing your information, you will help the scientific and research communities accelerate therapy development for SMA, as well as help Cure SMA better serve the needs of the SMA community.
SMA Research
To date, Cure SMA has invested more than $82 million in research (click here to see our funding summary from fiscal year 2020). The basic research that Cure SMA has funded, through research grants to institutions around the world, has delivered major discoveries. Because of these investments:
- We know the cause of SMA, which means we can develop treatments that correct the underlying cause of the disease rather than just reduce symptoms.
- We identified a “back-up gene” for SMA, which means we have a straight-forward drug target already in the body for new therapies to work on.
Using this knowledge, we now have multiple therapies approved by the U.S. Food and Drug Administration (FDA) and other regulatory bodies around the world that target the underlying genetics of SMA. We also have more than half a dozen clinical trials testing SMA therapies and more than 20 total research programs in various stages of drug development.
Our research approach funds programs at early stages, and then partners with companies to take them through clinical trials. Even with our current progress in adding new programs and advancing therapies, we believe it is critical to do more. We are not slowing down, and we will continue to build upon our current momentum.
Annual SMA Conference
All individuals with SMA and their families are invited to Cure SMA’s Annual SMA Conference! This is the largest SMA conference in the world, and it brings together researchers, healthcare professionals, individuals with SMA, and their families to network, learn, and collaborate.
The 2022 Annual SMA Conference will be held from Thursday, June 16th – Sunday, June 19th, 2022 at the Disneyland Hotel in Anaheim, California. Registration will be launching in early fall 2021. If you have any questions about the conference, please email [email protected].
Check out our 2019 Annual SMA Conference booklet if you are interested in learning more about what the conference has to offer! This was our latest in-person Annual SMA Conference, due to the COVID-19 pandemic.
How to Engage with Cure SMA
Follow us on social media to stay up-to-date with news and stories related to the SMA community! You can click the icons below and hear the latest.
Cure SMA Mobile App
Cure SMA also has created a mobile app for the SMA community. The Cure SMA Guide app is a support program that takes a new approach to provide useful tools and information related to SMA care, to use at home and on-the-go. Please download our app directly from the Apple Store or Google Play for Android devices. You can also click on the box below to view the Cure SMA Guide on any compatible web browser.
